School Stuff!

Happy Monday Rettgirls!

We at Rettgirl are so excited to announce the new School Stuff tab at Rettgirl.org!

Over the summer we put our heads together as we were getting our own Rettgirls ready to go back to school. Several of us had girls going to new schools and started thinking about what we wanted for parents and teachers.

Wouldn't it be nice to have a place parents and teachers could go and have an abundance of information right at their fingertips and just a few clicks away?

Click on the School Stuff Tab and it will take your directly to a place we have built just for you. A place where you and your daughters teachers can find information on books,websites,resource papers,software and links about Education and Rett Syndrome! Tons of stuff here that really goes into how a Rettgirls mind works with her body. Teachers will find invaluable information on:

Apraxia and how a Rettgirls brain works with her body

Eye gaze

Patience

How to ask

How to respond

Lack of Consistency does not mean lack of intelligence

Therapy Tips

Equipment and software that works

Communication

Positioning

Websites

All located in the books,resource papers and links recommended by parents who have been there and advocated for their girls.

We urge you to pass this information on to your teachers,schools and therapists! We are confident you will be glad you did!

As always..If you have a great tip or link that works with your daughter that we don't know about, please let us know so we can share it. Our goal is to make Rett Syndrome a little easier for all of us!

Terri V for Rettgirl

Nosey Cup

Good Day Rettgirls,

We have a new listing over at Rettgirl.org and are super excited about it.. It is called the Pink Flexi Nosey Cup(also available in blue.)

We discovered this cup during a visit to our daughters school. We had sent along a sippy cup and had assumed they had been using that.On this day we visited during speech therapy and our girl was drinking from this cup. I was floored! We were so happy you would of thought she had won a pageant instead of just acquiring the skill to drink from a cup.

Your child sips or drinks from the Nosey from the tall end. Because of the cut out the cup doesn't hit her nose or face. Therefore the liquid can get to her mouth before the cup hits her forehead. Yeah! Why didn't we think of that?

Help your child learn drinking skills with this flexible 1 oz. cup.( Also comes in a larger size.) Children with limited head extension, poor lip closure, and swallowing difficulty benefit from the cup’s flexibility. Unlike other cut cups, these Pink and Blue cups can be gently “squeezed” to change the shape of the cup lip. You can see the liquid through the translucent plastic all the way to your child's mouth. Reduces the risk associated with regular cups because you control the flow.



You can find the Pink Nosey Cup,among many other items, in our Product Review section under Feeding.



Have a great week!



Rettgirl

Arm Braces

Happy August everyone,

Here at Rettgirl we are working overtime to get the best ideas for home and school out to you as the back to school season is upon us!
We wanted to talk to you this week about the Arm Braces listed in our Product Review Section under Positioning. We are sure many of you know about them but for those of you who don't they can be an incredible tool.
The lady who makes these braces is the grandmother of a Rettgirl and many girls are using them all over the country.
Kelly says,"These work great with our daughter, although she is NOT a hand mouther. We use them to keep her left arm stable/still so that she has better control of her right arm – for using switches at home and at school."
This bloggers daughter is an extreme hand mouther and arm braces help her function better at home and at school. We use them at home for computer time and when her little hands just need a break. She is still able to use her hands. At school it keeps her on task. She can't hit a button or switch if both hands are wringing and or in her mouth.
Uses from the manufacturer are described as:

Prevents self injury or
involuntary self abuse
behavior

Facilitates medical treatment
by restricting elbow
movement to prevent
scratching of the face or eyes

Helps to keep hands away
from mouth and face

Promotes intentional hand
use by disrupting involuntary
hand movements



If you have been hesitant about trying them we would urge you to give them a shot. They really are worth it!



Rettgirl

Communication!

Good day Rettgirl families!
With school starting soon we wanted to tell you about something exciting we have on Rettgirl.org!
In our Product Review section of Rettgirl.org we have a Communication tab with wonderful ways parents are communicating with their girls.
We want to tell you about the Step by Step Communicator. This is a wonderful way to send messages back and forth between school and home. Instead of having to write notes to and from the teacher, your daughter can tell you herself by manipulating the button.

We have one Rettmom who reports that when her daughter stares at the button it is pressed for her. Her excitement when she gets to participate in circle time sends her into squealing giggles. When she returns home she can tell her family about her day. The best part of the day many report.
One Mom says, "We send this back and forth each day to preschool with messages recorded on it to promote conversation skills both at home and at school. It is very easy to use, almost no training needed for the teachers/aides to use this item. I highly recommend it!"

This button has 3 levels and can hold up to 75 messages. You can record outgoing on level 1. Incoming on level 2. 3 can be used any way you like. We know one family that uses this level for the alphabet,sing alongs,and turn taking. Mix it up any way you like.
We have included a video of one of our very own girls using the device at 5 years old after a day at preschool.
Enjoy!

The heat is on! Cooling Neck Wraps

COOLING NECK WRAPS!

Most of our girls have trouble with tempature regulation. This Neck wrap is amazing and is the perfect must have for summer! By simply placing the neck wrap in clean water for approximately 5 minutes and allowing the crystals to expand, it produces an evaporative cooling system for the user when placed around the neck.
The Neck Buddy Body Cooling Neck Wrap lowers the body temperature by cooling the carotid arteries in the neck. The material may become warm against the skin but by simply rotating the wrap, the cooling effect is rejuvenated immediately! It will stay cold ALL day long! Great for the overheated stressed out parent too!
We have found this item most beneficial for those summer days filled with outdoor therapies such as bike riding and Hippotherapy.
Families report taking a few on camping trips and picnics to beat the heat for the overheated kiddo.
You can find a link to this wonderful product among many other great tips via the Other tab under Product Reviews.
Do you have a great summer item you are using with your child? We'd love to hear it!

Stay Cool!

Rettgirl

Welcome Rett Girls!

We at Rettgirl.org want to welcome you to our blog. Here we will highlight the latest happenings on our website made especially for Rett Families by Rett Families.

Everything at Rettgirl is hopefully something that will help your little girl fight a stronger fight against Rett Syndrome. Check out our product reviews, tips from other families, and even our own little Rett-"bay" where you can find/sell/donate used items.

We heard back from many of you who wanted more info so here we are. We plan on highlighting all things on Rettgirl to give a little more insight on each tip or referral.

We want to make sure everyone knows there is a place to come for advice and tips on pretty much everything that affects us. Clothes, medicines, toys, equipment, supplements, doctors and so so much more!

We all know that the best advice we get in this world is by other loving families who have been there.

Please remember Rettgirl is only a referral site. Proceed with caution before purchasing an item, trying a new therapy or any of the tips recommended by our users on this site. Girl Power 2 Cure, Inc. is not liable for unsatisfactory or harmful outcomes. Especially in referrals involving diet, supplements or therapy, please check with your doctor before proceeding.

We look forward to hearing from you.